PMR awareness

[HeronNS]

There are "awareness" days for virtually everything. How about a PMR Awareness Day? How many of us had ever heard of this ailment before we were diagnosed with it - often months or years after seeking medical assistance with the symptoms?

[Suetum]

What a great idea

[caz3333]

That's an excellent idea as I had not heard much about it at all before I was diagnosed at 51. People I work with have never heard of PMR. I hope an "Awareness Day" is possible. X

[cassie1208]

Yes a great idea, but lots of work to get it off the ground. Awareness is really needed. Employers need to understand about it - that it is not just aches and pains.

We could do a PMR day maybe combined with Fibromyalgia- more folks seem to have heard of that.

[Adnamaxx]

Brilliant idea ...why not just declare a day and tell everyone?

[Car00b]

That sounds good to me . It would let some relative know it is not in my imagination .

Also doctors may come up with a recognised way of treating us . Without us hoping we will eventually come across the one doctor who isn't just trying this or that to make us better

[maria40]

Excellent idea. How would we get it off the ground? I think the backing of some health professionals would be useful and if anyone has any media contacts that would also be helpful. Twitter might also be a good way of spreading the word.

[Judigardener]

Using Social Media would be good and it needs a logo.

[cdenoncourt]

Has anyone ever heard of a celebrity who has it? We need a "poster child".

[Car00b in reply to cdenoncourt]

There is a story line in the latest series of Doc Martin. When in the second episode he diagnosed his aunt Ruth with it . So I imagine that someone in the writers friends or family had it .

[Hidden in reply to cdenoncourt]

Best idea yet! good thinking!

[maria40 in reply to cdenoncourt]

I think there was a minor royal who had/has it but can't remember who. Also might be possible to follow the thread from the Doc Martin episode which I didn't see but it has been mentioned on this forum.

[195094]

Awesome idea! Often thought it should be a topic for the Dr. Oz show, also!

[Hidden]

Great idea!!!!!!!!!! most people I tell them what I suffer from think I'm something from outer space, they have not got a clue what it's all about!

[54jen]

Great ideas. Always wondered why Womens' magazines never have information/articles about PMR/GCA. I tried starting a discussion on a mag website once but it didn't get off the ground. Has anyone got any contacts?

[PMRpro Ambassador]

Ten years ago there was almost nothing - just a support group and site in Scotland, a support group in East Anglia. Now there are 4 charities in Scotland, the Northeast of England, the Northwest of England and the National umbrella one in the London area. There is growing awareness and several top rheumatologists are also involved.

Princess Alexandra has had PMR (in the media in 2013). She is now 79 but I have no idea if she has ever been approached. MrsT had PMR - diagnosed in November and gone by May I gather!

There have been articles in the media on several occasions - one of the members of the PMRGCAUK group is a journalist and has managed to get some publicity like that. The Daily Mail has done several articles over the last few years and it has also been mentioned in the People's Friend a few times on the doctor's page.

Awareness Days require a vast amount of work - and funding. Much backing is often gained from pharmaceutical companies - and that isn't going to happen with PMR as the only drug that works is pred and it's as cheap as chips! No money to be made there. So when you win the Lottery...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Well if Mrs T had it, then it wouldn't dare have outstayed its welcome!

Can recall the story about Princess Alexandra, but think she is quite a private person, so perhaps she wasn't willing to come forward- shame if that's the case.

Was very disappointed with the Doc Martin storyline as its wasn't followed up after the initial episode, but that entertainment I guess!

I did try raising the subject some years ago with the Times doctor, but was given the usual brush off about too many illnesses to cover, blah, blah, blah.

Did try my best with the Mail, but obviously not a celeb!

My lottery win is going to be very stretched - when it comes!

[Hidden in reply to PMRpro]

Yes I would agree with your comment about Big Pharma, the only medications they are interested in are those that we have to take for the rest of our lives like blood pressure tabs etc.. Plenty of money in those! they get 15 years of uninterrupted income before a generic can be sold. That's another reason why vitamins, herbs and the like are not researched - they can't paten a vitamin! no money in it. There must be a better way of funding research into natural remedies. Somehow the government must find a way of funding research into new antibiotics. Big Pharma can't fund a project which doesn't produce vast revenues, to develop a pill that cures people is of no value to them.......

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Please see my reply below!

[Celtic PMRGCAuk volunteer]

If I remember correctly, a letter of good wishes was sent by the National to the Princess following the press report about her being diagnosed with PMR.

Also, Babs Powell from the dance group Pan's People for those of us old enough to remember them! Her PMR 'story' is one of those that appeared in The Daily Mail.

There is definitely more awareness around now than when I was first diagnosed approaching 10 years ago and there are more support groups springing up across the UK. Local support groups can be a very good vehicle for raising awareness via posters in community centres, pharmacies etc, and if anyone is interested in setting one up you will get lots of help from the National organisation, PMRGCAuk , and existing groups.

[maria40]

I don't think finance should preclude it if we can use social media and I'm sure that some of the conventional media contacts would help. If we could get on Radio 4's Today programme that would be brilliant. Just think: most of us in their demographic, up early, taking our meds, with computers and tablets ready to create an e-mail storm.....

[Polywotsit PMRGCAuk team member]

Hi there!

Just wanted to say that the UK national charity isn't in the London area - it has a London address but that's just a mail handling service - it is just a pigeonhole in an office in Holborn! Please don't assume that this is a London-based organisation - we are all over the country and also registered as a charity in Scotland too, so that we can support the charity north of the border.

We don't have an office because we have a very small amount of income every year and we wouldn't be able to have an office and provide the free services we do - like the national helpline, the website, a network of support groups, awareness sessions for doctors and, of course, this forum. We have thought about an Awareness Day. However, it does need a lot of funding. Also, we would need to tie it in with Giant Cell Arteritis because GCA undiagnosed causes thousands of people every year to lose eyesight. We have to stop that and we are working at a national level to put a campaign into place.

Yes, Princess Alexandra did have PMR. We wrote to her and got a very nice letter back, but it was quite clear that her 'people' felt that she should be left to get better in peace. That's the trouble with PMR - people who have it need the space and time to recover. It is also terribly difficult to get 'celebrities' to admit they have it, because it is associated with older people and there is such a cult of youth in the media. Also, if you are an actor, you don't really want people knowing that you have an illness that restricts your range of movement.....

Please help us to spread the word. If you appreciate this forum, please become a member of PMRGCAuk! pmrgcauk.com

[Gosingen]

Excellent idea... I don't expect any of us had until it "hit" us. I was diagnosed (self diagnosis) over five years ago and despite CRP of 133 and ESR of 55 didn't ring any alarm bells with my surgery nor did the hospital alert my doctors to query why the high results. I could barely move. I do believe things are improving and my local hospital in Portsmouth has a super rheumatology department with support groups, events etc.

But, I don't believe it would be an easy thing to get off the ground, like PMRpro says, the pharmaceutical companies aren't going to be interested as pred is so cheap so no financial gain for them.

We just have to spread the word through our friends and relatives... not easy as we don't look ill.

[Hidden]

That's a fab idea,like most of us I had never heard of this condition, and the time you wait for diagnosis is awful wondering what on earth is going on in our bodies.Awareness would be really great.

[HeronNS]

Look what I just found: hc-sc.gc.ca/ahc-asc/calend/...

worldautoimmunearthritisday...

[Hidden in reply to HeronNS]

Hi HeronNS, yes it's me again, I have looked quickly through the calendar, but can't find PMR, perhaps I've missed it, is it there?